Greenwood resident Vallillee added to Cystic Fibrosis Compassion Care Program

Wendy Elliott
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Tim Vallillee announced on Facebook May 6 that he is about to start taking the costly cystic fibrosis medication that he has been seeking for months.

In a video captured by his young son Isaiah, the 46-year-old Greenwood resident said he had been added to a Compassion Care Program of Kalydeco by Vertex. The drug is an effective treatment for patients with the G551D mutation of CF.

“Now I can cut my hair,” said a jubilant and shaggy Vallillee and “watch my son grow up.”

At $300 to $400 a pill, the twice-a-day treatment would cost upwards of $300,000 if he had not been added to the program. Vallillee had been lobbying the province to fund the pricey medication.

Vallillee was diagnosed when he was seven months old, when the life expectancy of someone with CF was around two years. He has to consume a number of medications when he eats, take an aerosol mask at least twice a day and consume daily antibiotics when feeling "down."

He says CF treatment has come a long way.

“When I was a child, I had to sleep in a tent over my bed with aerosol medicine flowing inside every night. I had to take up to 20 pills per meal, four aerosol masks per day, did postural drainage twice a day, and had frequent check-ups every six weeks to track my progress,” he said.

Vallillee loves to perform and says singing helps him keep an eye on his lungs.

“I had been singing in rock bands for a number of years and in the mid-1990s, I stopped for a time, and soon became sick. I quickly got back on the wagon knowing that my singing ability keeps my health in check.”

A number of years ago, he found vocal coach Nancy Denton-Peck and today people are astonished that he has such a powerful voice when he lives with a disease like CF, which “makes me very happy and proud.”

Cystic fibrosis is the most common fatal genetic disease affecting Canadian children and young adults. Vallillee has been fundraising for the Great Strides CF walk in Kingston on May 25. Walks are also being held that day in Yarmouth, Barrington, Halifax and Cape Breton.

Geographic location: Toronto, Kingston

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Recent comments

  • Barbara Kennedy
    May 06, 2014 - 21:51

    I am so happy to hear this about Tim way to go for pushing so hard, you are and always will be an inspiration to so many

  • Theresa
    May 06, 2014 - 20:54

    Soooo happy for you, Agatha and Isaiah

  • G Howell
    May 06, 2014 - 20:53

    This is fantastic news for everyone who knows Tim. This man is always the first person to try to help everyone else. He deserves this great news!!!

  • Barb Zwicker-Brown
    May 06, 2014 - 18:17

    Awesome news!!!! So happy they finally heard you!

  • Crystal Taylor-Beals
    May 06, 2014 - 18:08

    You are so fortunate to have been selected for this drug. I have many CF friends that I met in Toronto while awaiting my dbl lung transplant. I myself do not have CF but we all did rehab together those of us waiting. It is an awful disease to have and even a lung transplant does not take the disease away. I pray this medication works for you, CF patients need help and this seems to be a beginning.

  • Michele Long
    May 06, 2014 - 16:53

    that is awsome news..congrats to you

  • Dot Vallillee
    May 06, 2014 - 16:06

    Many thanks to everyone who has supported us during this trying time. We are over the moon with happiness. Thanks be to God.